Sunday, August 21, 2011

The past week

This has been a pretty rough week. My friend from high school lost her little boy yesterday. I feel heartbroken for them. I was just down the hall with Lucy when it happened. I was so grateful I was here to witness the amazing strength that family has. I can't imagine anyone handling the death of a child with that kind of faith. It hit close to home and taught me I have a ways yet to go.

I'm having a hard time with Lucy. Coming to the hospital is getting harder and harder. She's fighting though which gives me the strength to fight too. It seems like anytime anyone talks to us we get bad news. Today one of the nurse practitioners came in and said, "we need to talk." I felt sick. "Do you realize your daughter is wearing skulls on her shirt?" Needless to say I was pretty relieved.

Lucy is wanting to sit up and crawl but her CPAP makes it difficult.

Hazel misses sissy.

Jack gets jealous when I forget to take pictures of him.

Lucy had a bronchoscopy this week. I don't even remember what day. The were hoping they'd find a bunch of mucus to suck out and hopefully help her get off CPAP. They didn't. They found that Lucy's bronchi are really narrowed and that everything in her lungs was a little enflamed. In the last week Lucy has made almost no progress coming off CPAP until today. They are planning on doing everything really slowly with her.
I also had a talk with cardiology this week. They've been wanting to push forward Lucy's cardiac cath. They even rescheduled other patients to get her on the schedule for tomorrow but Lucy's surgeon didn't feel like it was safe. She's only 2 1/2 weeks post op and if they decided to put a stent in during a cardiac cath it could tear where the surgeon worked before. Which would be catastrophic for Lucy. We're trying not to look too far ahead but it's hard not to. Lucy is still in heart failure and could remain so for months. This week was the first time anyone has talked to us about a possible heart transplant for the future. We still have no idea when we'll be going home.


Christin Foscarini said...

Liza thank you for keeping up with blogging so we can feel involved in some way. Love your family and hoping for the best.

The Coxclan said...

I am glad I got to see your sweet Lucy last night. She is such a little fighter. She is not giving up at all. She is so beautiful and precious. I was so happy to see her and get some smiles playing peek-a-boo. I just can't get over the strength of her spirit. She is a big tease and she is willing to do whatever it takes to fight. I am so glad you are here and that I could get a glimpse of her strong spirit last night. It is gonna be a rough ride but I know she is up for the challenge.

The Coxclan said...

P.S. I looooove her skull and crossbones shirt. So perfect for her. She is one tough chica.

StrawberryBlond said...

I am so sorry for your friend! That is so difficult and I can't imagine what it's like. I am glad to hear that they are finding strength and comfort during a difficult time.

I know I can't do much but I do hope you know that we are in your corner and are praying for you guys everyday. My sister Heather shared a little nugget of wisdom from someone in her ward: in the scriptures it always says, "And it came to pass..." not "And it came to stay." Maybe that will help a little. :)

Anaise said...

We're trying so very hard to add our strength and faith to yours. I'm sorry for your friend's loss--it is simply devastating. Here's hoping some good news comes your way soon.

Tom/Tabitha said...

Praying here for all of you. (I like Lucy's skull shirt, too... ) I hope you hear more good news than bad SOON.